BackgroundProviders and healthcare organizations have begun recognizing the importance of patient empowerment as a driver of patient-centered care. Unfortunately, most studies have investigated empowerment with single diseases. Identifying factors of empowerment across conditions and populations would enable a greater understanding of this construct.ObjectiveThe purpose of this study was to understand empowerment in relation to health information-seeking, interactions with providers and peers, and healthcare access in chronic disease patients. This study also sought to identify key empowerment factors and their association with patient characteristics.MethodsParticipants were recruited through PatientsLikeMe, an online research platform where patients share their personal and medical history data. Patients completed an online survey that assessed self-reported health behavior (e.g. knowledge-seeking, experiences with healthcare providers, and peer interactions) and healthcare access. An exploratory factor analysis identified key empowerment domains. Domain level sum scores and sum of all domains (total score) were compared across patient characteristics and diseases.ResultsOverall, 3988 participants were included in the study, with the majority actively involved in their healthcare, but many cited difficulties with matching their treatment goals with those of their physician (34 %) and spending sufficient time with the physician (36 %). Factor analysis identified two domains—Positive Patient–Provider Interaction, and Knowledge and Personal Control—that explained >60 % of the overall variance in the observed variables. Mean total empowerment scores for patients with a primary complaint of Parkinson’s disease (61.8) and multiple sclerosis (60.3) were significantly greater than fibromyalgia (55.3) and chronic fatigue syndrome (54.8). Patients who were older, male, more educated, and insured also reported significantly greater levels of empowerment.ConclusionsThe two domains of empowerment identified in this study are consistent with previous studies, but the differences in empowerment levels across diseases suggest a need for further studies on disease-related attributes of empowerment. Future research should examine the pathways for empowerment, as well as the relationship between empowerment domains and clinical outcomes.Electronic supplementary materialThe online version of this article (doi:10.1007/s40271-016-0171-2) contains supplementary material, which is available to authorized users.
Background Discussions regarding palliative care and end‐of‐life care issues are frequently delayed past the time of usefulness, resulting in unwanted medical care. We sought to develop a patient‐reported outcome (PRO) instrument that allows patients to voice their symptom burdens and facilitate timing of discussions. Subjects, Materials, and Methods A seven‐item PRO instrument (Cota Patient Assessed Symptom Score‐7 item [CPASS‐7]) covering physical performance status, pain, burden, and depression was administered (September 2015 through October 2016) with correlation to overall survival, correcting for time to complete survey since diagnosis. Results A total of 1,191 patients completed CPASS‐7 at a median of 560 days following the diagnosis of advanced cancer. Of these patients, 49% were concerned that they could not do the things they wanted; 35% reported decreased performance status. Financial toxicity was reported by 39% of patients, with family burdens noted in 25%. Although depression was reported by 15%, 43% reported lack of pleasure. Pain was reported by 33%. The median CPASS‐7 total symptom burden score was 16 (possible 0–112). With a median follow‐up of 15 months from initial survey, 46% had died. Patients with symptom burden scores <29 and ≥29 had a 6‐month overall survival rate of 87% and 67%, respectively, and 12‐month survival rates of 72% and 50%. A one‐point score increase resulted in a 1.8% increase in expected hazard. Conclusion Patients with advanced cancer with higher levels of symptom burden, as self‐reported on the CPASS‐7, had inferior survival. The PRO facilitates identification of patients appropriate for reassessment of treatment goals and potentially palliative and end‐of‐life care in response to symptom burden concerns. Implications for Practice A seven‐item patient‐reported outcome (PRO) instrument was administered to 1,191 patients with advanced cancers. Patients self‐reporting higher levels of physical and psychological symptom burden had inferior overall survival rates. High individual item symptom PRO responses should serve as a useful trigger to initiate supportive interventions, but when scores indicate global problems, discussions regarding end‐of‐life care might be appropriate.
BackgroundStudies have demonstrated that comorbidities compound the adverse influence of cancer on health-related quality of life (HRQoL). Comorbidities adversely impact adherence to cancer treatment. Additionally, adherence to medications for comorbidities is positively associated with HRQoL for various diseases. This study used the Center for Disease Control and Prevention’s Healthy Days measure of HRQoL to explore the association between HRQoL and adherence to comorbidity medication for elderly patients with cancer and at least one comorbid condition.MethodsWe conducted a cross-sectional survey combined with retrospective claims data. Patients with metastatic breast, lung or colorectal cancer were surveyed regarding their HRQoL, comorbidity medication adherence and cancer-related symptoms. Patients reported the number of physical, mental and total unhealthy days in the prior month. The Morisky Medication Adherence 8-point scale was differentiated into moderate/high (> 6) and low (≤ 6) comorbidity medication adherence.ResultsOf the 1847 respondents, the mean age was 69.2 years, most were female (66.8%) and the majority of the sample had Medicare coverage (88.2%). Low comorbidity medication adherence was associated with significantly more total, mental and physical unhealthy days. Low comorbidity medication adherence was associated with the presence of patient-reported cancer-related symptoms. Patients reporting low, as compared to moderate/high, comorbidity medication adherence had 23.4% more unhealthy days in adjusted analysis, P = 0.007.ConclusionThe positive association between low comorbidity medication adherence and the number of unhealthy days suggests that addressing barriers to comorbidity medication adherence during cancer treatment may be an avenue for improving or maintaining HRQoL for older patients with cancer and comorbid conditions.
This study was sponsored by Genentech. Khoury, Michael, Parikh, and Bunce are employed by Genentech. Casebeer, Drzayich Antol, DeClue, Hopson, Li, and Stemkowski are employed by Comprehensive Health Insights, Humana, which was contracted by Genentech to conduct this study. Sehman is employed by Humana. Based on this research, 2 posters were presented at the Academy of Managed Care Pharmacy Nexus 2017 on October 16-19, 2017, in Dallas, Texas. Another poster was also presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Annual European Congress on October 29-November 2, 2016, in Vienna, Austria.
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